Below is my most recent post in my SCS journal...As my journal is VERY long and this latest post may have a greater importance to those of you who have just had a SCS or are considering one, I think you should read it. Otherwise, I wouldn't have reposted it like this. The part about still needing pain meds is the most important part that I need to share. This post is really the "bad" but it isn't bad as long as you consider that you will probably still need your pain meds.........I pray for each of you because I know the place you are when you begin considering a spinal cord implant. I just want to give you as much information as possible. Kathy
Ya'll know that I am trying to be as candid and objective as possible. I am now about 10 weeks post-op and here are the lessons learned.
1) For some reason, I thought that the addition of a spinal cord stimulator would mean the end of most pain killers.. NOT SO for me. I have given it a good "team try." I have eliminated notriptyline, reduced gabapentin and have weaned myself off of all fentanyl. And I am in MISERY. Does that mean the spinal cord impant was not good? NO. I wouldn't trade it. It is a huge help but help is the keyword. It is another, albeit expensive, tool in the arsenal. Remember that when I had such a successful trial I was STILL on all my pain meds. And it took me from functional to doing great!!!! But for me, removing the "long lasting" narcotic and relying just on the short term narcotics didn't work. Especially since I had been able to improve my activity level (the great part about the spinal cord implant) so much. So lesson 1 - with the addition of a spinal cord implant, you may or may not be able to reduce your medications. AND I saw my Medtronic rep this week for another "tune up." I asked her about this issue. "How many people have you had with a spinal cord implant be able to completely stop pain medications?" She said that unless they were on very minimal medication, it just doesn't happen. She added that in her opinon, spinal cord implants were designed to improve the quality of life but not necessarily remove the need for pain medication. I was able to cut back on my "short term" opiate usage but I think I will still need to add back a long term med to stop that terrible see-sawing pain thing.
2) I am still dealing with some surgical site pain complication. Just know that you, too, might have it. Mostly from the lower back area which has always been my worst area anyway. After all, they make an incision in your lower lumbar region, run a cord from it, up through your spinal column to your thoracic area using a tiny "roto rooter."
3) Although the upside of the rechargeable stim is that it doesn't have to be surgically replaced as often as the nonrechargeable plus, it is smaller.....the downside is that you will spend 4 hours a week charging your unit and that is a pain! I am used to it but I didn't factor it in to my initial decision. This is a major commitment of time and a major lifestyle change.
In closing, you all know that I am older than many of you and have a tougher time with my recovery, possibly. When I add back my longer lasting meds, I will be great again. Back when I was on my lowest dose fentanyl patch and was tapering off (12 mcg patch) I felt good enough WITH my stimulator to watch my daughter run her first marathon plus herd her too darling children, my granddaughters - 3 and 5) all over Atlanta, GA, with comfort in 40 degree, rainy weather. COME ON! It ain't all bad.
I just promised to give you the good, bad and ugly. So there it is. So far. Kathy